It has been a long time.

Quite a while has passed since my last post. Things have taken a turn for the worse. A year ago in August 2014 we discovered a third recurrence of my colo-rectal cancer. I started a regime of chemo to reduce the tumor in my pelvic area. This was considered a local recurrence and the cure is very possible although with each recurrence the prognosis for success reduces.

I went through three months or chemo that had some bad side effects One of the worse was from a drug Oxyplatin. It causes you great sensitivity to cold, I could not drink cold drinks, I could not handle cold items and my mouth hurt and felt like it was full of pins and needles if I took a cold drink.

You cannot believe how your body craves something cold in your mouth. Ice water, a cold beer, ice cream, anything. You cannot stand the pain. This lasted till early December 2014, when we ended chemo.

In the mean time I consulted at the University of Arkansas Medical School with their chief oncological surgeon. The surgeon in Jonesboro was reluctant to perform the surgery because of the scar tissue and the high risk of bleeding.

January 15th I underwent surgery in Little Rock to remove the small cancerous mass and install a colostomy in my side. I was adamant I did not want a resection. I had roughly 8 years of having between 15 and 25 bowel movements a day, many accidents, embarrassments pain and bleeding. That was enough. Apparently the chemo had been very effective because the surgeon found no evidence of cancer.

When I came out of surgery I had a bad reaction to the anesthesia that caused some very severe mental and behavioral issues. They also discovered a fistula that was connected between my small intesting and rectal area. They shut down my digestive tract, I went on a protocol where I received my food through PIC lines that connected directly to my blood vessels. I had nothing to eat or drink for over ten weeks.

In addition the fistula allowed drainage from my small intestine to come out my rectal area. It was so acidic that within days I had a severe case of "diaper" rash and it lasted for over six weeks. I ended up back in the ICU at UAMS for over a week, because the stoma was leaking right toward the surgical incision and there was a real worry of sepsis.

I also went to the ER in Jonesboro and was admitted for some reason I cannot recall. That night I wanted a sleep aid and had such a powerful reaction that it brought the emergency teams from the heart wards to see if I was having a heart attack. I was freezing and shaking so hard it hurt. The next day one of the nurses in attendance came to me and said she had never in all her days seen a human body shake as hard as mine. They just kept covering me with blankets until the condition passed, but it was not nice.

Back home the "diaper" rash continue to grow worse until the pain was unbearable. My butt looked like fresh ground hamburger. I could not sit, I could not lay down, I could only stand and then not for long. I tried sitting on all manner of cushions, ordered special cushions, nothing worked.

One evening I decided that if this was going to be the quality of my life I could not stand it. I would end my life. That was the closest I ever came to wanting to harm myself. I told my wife I simply could not take it anymore. She called UAMS and they had me come down Monday March 14. When the surgeon saw the condition I was in, that I sat crouched in a chair on my legs instead of my butt and understood the extreme pain I was in he admitted me and scheduled emergency surgery for the next morning March 15.

They fixed the fistula. However the damage was done. My body was so run down I could not walk, I had trouble breathing, and was just exhausted from the fight. Because I had not had anything to eat for 10 weeks the fecal matter in my upper colon had hardened. I was subjected to enemas, and finally an NG tube to try and work the material loose so my colostomy would work. That little dude had no action for the same period. Finally one night my colostomy bag puffed up like a little bag of bread, I mean INFLATED. I called the nurse thus began one of the darnedest episodes I'd ever been part of. Two nurses stood next to me with plastic tubs catching the liquid material from the bag and one would rush to dump the output while the other caught the next load. I was so attached to the bed with tubes and stuff all I could do was stand there, I couldn't get to the bathroom.

When the episode finally was over one nurse said that he had counted 7 liters of material and wasn't sure he'd really accounted for everything. I guess that upper colon was now clean.

I still wasn't done with the NG tube as the doctors wanted the bile coming from my stomach to been lighter in color and my was still black indicating the presence of liquid stool. So they didn't believe that the blockage had been completely resolved. However after a day and with the addition of a liquid diet they felt the risk of removal of the tube was OK.

Finally after 11 days the doctors felt I would do better at home as I was just not making good progress in the hospital. I was released, went home and had to crawl up the stairs to my bedroom. I was in so much pain and I could only take six steps before I had to just simply stop and breath. Weak doesn't describe the condition, powerless comes close. During this three month period I had four transfusions because my hemoglobin had gotten so low. It was in the 7's and 14 is considered the low range.

Under the diligent care of home health care, physical therapy and my wife I started making some progress, but it was very slow.

Because of my condition my oncologist schedule no follow up chemo and actually we waited until August before we did a follow up scan to make sure we had gotten everything. The day after the scan the doctor called and wanted to see me right away. I had already read the results of the scan as it is posted to MyChart right away.

The scan revealed some nodes in my lungs that had not been there. The doctor felt the cancer had metastasized even when I had surgery to remove the recurrence and that we were now fighting to extend my life not cure the problem.

I made an appointment at Mayo's and we agreed we would do nothing until I went to Mayo's had a scan there to confirm or deny malignancy. Mayo's confirmed on October 6th, and in fact found a couple of suspicious spots on my liver, a small spot on a vertebrae, a swollen and inflamed lymph node in my chest and a probe of my rectal area found a small local recurrence of the tumor the surgery was supposed to remove back in January.

You can imagine the impact that news had. Thus began the trip down diagnosis Stage IV.

Very quickly I am doing well, my mental attitude is one of positive anger that I will survive. I am responding well to the chemo I am on at this time. Things may change but right now I'm OK. I will write more later, but this is enough.

I am going to stop this blog here, it is too long, but I had not written for so long I wanted to get it out so if I feel like going on it would be such a mind dump.

Fear

I don't seem to express it any other way, but I seem very fearful and have a hard time with depression. My scan on 7/22 revealed three small nodules in my lung and another in the other lung. There is not appearance of anything in the liver or even where I had surgery appears to be cancer free accept the soft tissue growth, scar tissue, cannot be ruled out, but the doctors all agree it is simply the results of the surgeries.

In the meantime the lungs are new and have me absolutely on the run. I spend most days feeling blue because it escaped the confines of my pelvic region.

I do chores around the house and try to disguise my depression from my wife. But it seems like my mind has a "mind" of its own that I have little influence over. It has always been that way. I made my living with my mind, and as a result it is very strong and active. Now I wish it weren't so.

What's to fear, really not much at this point. The only point of potential cancer is my lungs, it is very slow growing and I've even been told by my oncologist that I could wait several months have another scan to see if they've grown. However I believe his diagnosis for not that the nodules are malignant and are part of my colon cancer development.

I do have an appointment for Mayo's on Oct 5, this is now August 11. So it is sometime off. But I worry so much. It makes day to day living kind of a challenge. So far I've been up to it, but I still find myself dwelling on my troubles instead of my blessings. I will try to do better.

Not What I'd Hoped For.

Yesterday I had a CT Scan W & W/O Contrast. The results of the scan show two areas of concern. My lower left lung has 3 nodules showing about 7mm in size. There is still an inflamed mass in my pelvic area, but while tumor recurrence could not be discounted it is more than likely scar tissue from the numerous surgeries.

I was upset, to say the least. I sure was hoping for a clean bill. However the nodules are about 1/4 inch in size and hopefully can be removed easily. The mass in my pelvic region is not worrying me too much. After all a surgeon was in that area twice, January and March of 2015 and found no evidence of cancer.

I have been off chemo for 8 months and hopefully an alternative can be found that would keep me off the chemo I was on because it sure had it effect on me.

Terry and I will see the Dr. tomorrow morning and find out what plan of action can be developed. No lymph nodes are involved and other than the three small nodes in my lower left lung and the unknown in the Pelvic region I'm clean.

I feel pretty good, but my mind is playing its games and from time to time I find myself clenching up pretty good as I realize that Cancer is back.

Some time has passed

It is now four months since my last surgery and my start of recovery. When I first came home I had to crawl up the stairs to my bed and I couldn't take ten steps without being breathless. The oncologist I see said he did not think I realized just how sick I was, I think I did.

I still recall lying in bed, so exhausted, in pain and spiritual pain that I kept praying for time to pass. I know with time the pain moderates or goes away and your mind will begin to develop protection from your bad thoughts. You have to go through that exercise though and this recovery was the toughest yet.

Things make you feel good though. My daughters kept telling me about their friends asking about their Dad. That made me feel good. My wife, God bless her, never gave up, was by my side when I needed her, which was a lot at first. I recall one time she got in my face when I made a statement about whether or not I was going to make it. "You'll make it all right, you are a tough person and besides I'm not going to let you die. I need you and it is too soon."

At age 62 when I began this trip with cancer I still thought of time on my side. Now after 2 recurrences and age 70 I ended up with doubts that I have to fight off. Fortunately I still have a wife that is relentless, I have daughters that love me very much, and I have a fellow colon cancer survivor who has become a friend and encourages me. I am thankful for these people.

After four months my mind is more settled although I do get tired at times which leads to some bad thinking. Vince Lombardi said it so well years ago, "Fatigue makes cowards of us all." Our will gets sapped and our strength seems to fade but a good rest or some uplifting success in home projects can reverse the bad thoughts and helps life be more enjoyable.

From a physical standpoint I am still relatively weak but I go up and down stairs quite well. My feet are numb on the bottom and for some reason my fingers tips are numb. My PCP ventured that some of that may be due to the chemo after effects. That is about the only physical side effects I notice at this time. My stoma is working well. I do have drainage from my rectal stump, but according to others in my condition that isn't unusual. It is no longer red, so the insides appear to have healed and it is just a mucous that is draining. I often wear a pad to keep my brief from becoming moist, but I can feel a wet bottom quite often.

All in all, I hope we got it this time. I am recovering nicely and don't have many restrictions on what I eat or do. Fatigue perhaps has the greatest impact at this time, but hopefully as I continue that will improve. A big thanks to all who have helped me with their prayers, thoughts and encouragement.

Begining of 7 weeks of home recovery

I am getting stronger and feeling better. However still after 9 weeks from surgery my abdomen is awfully stiff when bending over. I guess it has to work its self out but perhaps with the stoma just above and left of my belly button it'll always be a presence. Recovery, while going well still has some complications.

Last weekend I was standing in my briefs and happened to look down at my legs. The left leg seemed noticeably larger than my right. I had never noticed that before and could it be new or just gone unnoticed for years.

My feet still feel swollen because the skin feels taught but the nerve compression seems to have decreased and they are not as tender as they were the first few weeks of recovery.

I did make the Home Health care Nurse aware of my leg swelling. She became quite concerned because I had not shown that symptom the week before when she was here. However, I don't recall having my pants down so it would not have been noticeable to her.

My wound seems to be healed. We do not bandage it any longer, but we keep it clean and watch it should the undercut portion not be healed and break out again.

My blood pressure has risen to the 160 to 180 mark and I consulted with my GP over MyChart and we agreed for me to start Verapamil and Losartin about a week ago. My BP has come down but not as far as I'd like. However, it takes some time for the therapeutic level of meds to be reached. At least it is below 160.

After the HHCN saw the edema in my left leg we also added HCTZ, a water pill I took for some time. The concern of the medical folks is possible blood clot. However I have no pain, just a tautness of the skin. There appears to be about an inch plus difference between the two legs. There is a slight discoloration, but I have no idea why.

This morning I looked at the legs and I did notice the difference in appearance was less than before. So perhaps the water pill is working. I measured with a tape and had less than an inch difference in size. I feel encouraged. In the meantime I feel pretty good and my attitude is good.

I have gone back to taking a Xanex and 10mg of Melatonin before I go to bed. It just seems to help. I've been having an increase in urination attempts. In fact for some nights it was every 45 minutes which is frustrating and interrupts my sleep. Since taking the Xanex and Melatonin it appears the frequency has slowed down. I still keep a urinal by the bed because it is irritating to get up in the middle of the night to pee. Even if the bathroom is a few steps away.

So begins Week 7 of home recovery.

Colonoscopy: The Details

Your Dr. schedules a colonoscopy with a surgeon or GI Guy who does a lot of those procedures. You are prescribed a strong laxative because you need a pretty clean colon so the doctor can examine the surface of the colon for polyps.

Doctors can detect and remove polyps as small as 1 CM.

So, the day before the procedure you take off work or you stay home. The laxative is usually in a gallon jug now, and you have to mix it. Many come with artificial flavoring and I recommend you choose a flavor you don't especially like but can tolerate because it will be some time before you drink that flavor again. Make it the day day before and refrigerate it so it is nice a cold when you begin to drink the laxative.

Drink it a glass at a time. The directions will every 20 minutes. You may have to slow down, I get sick if I drink it that fast. The important thing is to drink it all and you will have a very liquid diarrhea. In fact, some describe it as though they were peeing out of their butt. That means it is working and cleaning that colon.

Keep drinking water and be prepared to stay up a bit because some times the diarrhea continues for sometime after you've finished the laxative. That's OK.

You do have to fast, or just drink liquids, eat jello, or Popsicles the day you prep. However, your mind will be elsewhere.

The day of the procedure you show up, undress, put on a gown and are wheeled into a small colonscopy room. There are usually two attendants and the Dr. and you lay over on you left side to give the Dr. access to your butt. You have an I.V. in and one of the nurses gives you a little shot and it is called an amnesia drug. You don't remember anything but the Dr. can give you directions to move a little one way or another.

All of a sudden you come to as the Dr. is finishing up retracting the scope, you wonder if the test is over and are told yes. You are taken back to a recovery room.

Now one thing, the colon wants to collapse around the scope so they use air to inflate the colon so the Dr. can examine the surfaces thoroughly. So when you start to have these enormous farts, enjoy, man or woman it is the same and it feels so good to feel you tummy go down. Don't hold back. I've had so many colonoscopies I've want to record my recovery but always forget and am too far out of it anyway.

So get a colonoscopy, nothing to be afraid of unless you keep putting it off, then you are just kidding yourself. Better to know than not.

Start of Week 3

April 11, 2015, the start of week 3 of recovery at home. I am discounting recovery starting in the hospital because I came out of the hospital so low I don't feel other than some healing of the wounds I recovered anything.

So two weeks have passed and I have progressed to having my staples our, I walk pretty good, my energy is still low and I have to rest a lot. I have been outside and helped Terry with some repairs I can't make yet.

My sleep is somewhat agitated. My mind is restless and just wanders and keeps me awake at night till quite late. I am taking some Melatonin and that does seem to help. However I fear the night because my mind just seems to take over reality and I have a hard time distinguishing between my macabre thoughts and easy times.

The swelling seems to have gone down in my abdomen. I tried on a pair of pants when I first got home and couldn't even close the waist I was so swollen. I tried a pair yesterday, they went on well, however I've lost so much weight I sure won't be able to wear them for a while.

The soreness has pretty much dissipated from my abdomen, but around the stoma it feels heavy and awkward. My stoma is working quite well but I'm not sure I've been eating the types of food that helps it work. I had an episode two days ago where I passed stool off/on for about an hour. It felt good, but I don't think I want that type of action. To me it seems that it is having somewhat of a hard time.

We are eating regular diet type foods with some minor adjustments. I don't eat foods with seeds or skins. Other than that I had a couple of pieces of pizza last night that was kind of spicey but so far it has not effected me.

My stomach feels mildly upset quite a bit. I do not get sick, I think it is just in the recovery stage from all the surgery. At this point I have to keep concentrating on the fact that I am stronger and feel better than I did two weeks ago. It is kind of hard when you feel so weak and tired. But I did cook breakfast this morning and that is a help to Terry.

C'mon week 3, let's get past fast!

Week 2, Day 3 at home

Survived the weekend. Had a ham lunch on Sunday, it was one of the spiral, honey, sweet ham's. While the meat was good Terry wanted to make some gravy and the gravy came out like candy, it was not good. However the green beans were tasty and the mashed potatoes OK.

I have started taking Melatonin to help me sleep at night. It seems to work. I wait until about 8 - 9 PM and take two 6 mg tablets and chase with water. With in a little while it is lights out and while I wake to use the bathroom, or wake several time a night just to look around I go back to sleep and usually sleep till Terry wakes. For the most part I feel rested and because it kind of puts me down I don't have to deal with the evil genies.

For some reason today feels like a step backward. I am feeling week, tired and rundown. I can try to lie down but I usually just lay there awake with my mind wandering about my universe. However, I did complete the PT exercises this morning and there have grown a bit more strenuous than last week.

It is still mentally tough, I want progress not a day backward. However when I have had surgical recovery in the past that has been how it has been. I would have a day that I would feel good, pumped up and perhaps over do, then the next day, oof!

Spring is here. The plum, cherries and peach trees have or are blossoming. Terry early flowers have come up and the progression moves along as the other flowers are starting to make their appearance. So I need to concentrate on that with I enjoy and perhaps my mood will lift too.

Here we go again

April 3, day 8 of returning home after major surgery at UAMS in Little Rock, AR. It all started last summer 2014 as my CEA count began to slowly rise. Now this is the second recurrence of a colo-rectal cancer that has been hanging around since 2007.

I started chemo in September of 2014 and it lasted until December of 2014. At first it wasn't too bad, but by the time I got to December I was just a mass of tired, sick human flesh simply was biding his time.

I took six weeks off from chemo to let the body settle down then on January 15, 2015 I went to Little Rock for surgery to remove the now defeated small mass in my pelvic region. It was supposed to be pretty simple surgery, besides it was under the direction of the chief oncological surgeon at the University of Arkansas Medical School. Not so.

When they went to seal the rectum, create the stoma and finish they found a fisstula that was at the based of the pelvic area and was leaking small intestine fluid into my rectal area and then draining out my rectum.

As a result I had an acid burn on my buttocks for five weeks that was excruciating. I was hooked up to a TPM system that fed me through my veins and I never had any food or water for that five week period while they tried to get the fisstula to heal.

The pain was so intense I spent every day either standing up or lying down because I could not stand to sit on anything.

Finally on March 15 we went to Little Rock and I told them I just could not stand it any more, it was more than I could handle and I was entertaining bad thoughts like harming myself.

I was immediately admitted to the hospital, I underwent surgery at 8:30 AM on Tuesday March 16 to remove the fisstula and reroute the ostomy. I awoke to my second recovery and the pain in my buttocks is gone. The ostomy is short and is working well so far and I think corrections were made. But at what expense.

I am traumatized by the surgery, the drugs, the setting, the lack of food. I went in the hospital 250 and came out 204. I am so weak I can barely walk, my stamina is virtually nil, and I feel achy all the time,

However, I have gained four pounds this week, I am walking about the house now albeit I have to stop and rest a lot. I am able to go up and down stairs, but don't yell fire.

I don't sleep well, my mind works overtime stewing over my situation. I am trying some melatonin and even though the Dr. doubts its effectiveness I have found a lot of people who are taking the OTC drug. The best thing to happen is for me to just plod one day at a time and notice the improvements along the way as I usually do, and they are occurring, But right now I am disheartened, feel alone and sick.

Early Start

This evening is the day before, the day before. On Thursday, Jan 15, 2015 I will have my third bowel resection since 2007. In fact it is just a few days past eight years since my first surgery.

I cannot tell you how I hope this is my last. The first surgery was supposed to be uncomplicated, a simple resection and a cure. The Oncologist told me that from the pathology report I was cured, it was as though I'd never had a polyp before.

Initially I encountered frequent bowl movements and I characterized it as going a little a lot. Ten to fifteen times or more a day was not uncommon. There were some days where I didn't go all day, but other days I had accidents and had to clean out my underwear, other days I just had the urge often.

Two years later I started to run into pain, bleeding, and accidents that came without warning. The third year I had a colonoscopy at VA, 2010, and the Dr. said the anastomosis was clear. It wasn't because in April of 2011 after months of treatment for IBS the doctor finally wanted to run another colonoscopy to see what was going on, what was going on was a tumor at the anastomosis that had nearly encircled the bowel. The dumbass at VA missed it.

So in May and June of 2011 I began a regime of concurrent radiation and chemo. It was tough, it was very tough. At the end of June I ended up lying on a bed in a trailer screaming in pain, getting up every fifteen minutes and have diarhhea and then lying back down to get a few minutes rest. After about two weeks the inflammation healed and began to feel good. Then in August 2011 the second resection to remove the burned tumor. All was good.

Around April or May of 2014 my CEA started to rise, and rose until in August it hit 6.2, 3.2 points over normal. A PET scan revealed a hot spot in my pelvic area. A MRI with Contrast reveals a small malignant mass about in the same area as the previous two surgerys.

So I had to indure three months of chemo again which made me feel sick, tired, and fatigued. I ended up spending two months just sitting and enduring.

Thursday I go to a specialist in Little Rock to have the malignancy removed, hopefully. The scans show it very small and not attached to anything like a bone. It outlook is good. My normal surgeon declined to do the surgery because of the risk of a bleed. The surgeon doing the surgery is a specialist in colorectal cancer surgery and well reputed. Hopefully I will survive the surgery and perhaps this time we may get it all. I pray so.

Done with Chemo

I am done with chemo for the time being. I have already discussed with the oncologist that I will have some follow up chemo after surgery, but last time I had it the effect was pretty mild.

I have had six rounds of chemo, every two weeks, so three months of feeling off, fatigued, lethargic and having a mildly upset stomach will be done. I have to be off chemo for six weeks before I can have surgery. I have an appointment with the specialist in Little Rock on December 15, 2014 and I will sign a consent form then that is good for 30 days. That means that surgery will take place after the first of the year and must be before the 15th.

I'll look forward to feeling well for the 2014 Christmas.

Chemo: Round Six

I am becoming an old hand at this. The oncologist and I had a discussion because I want to end the chemo, he argue for it as we had agreed to six rounds, and I have completed five. In addition I realized this is a short week and I won't get in to see the specialist this week, however the week after Thanksgiving would be fine. It would also be the second week after chemo and later in the week I start to recover. So I went for Round 6.

However, there is a drug they give that helps with anti-nausea and is a strong steroid. The effect is I feel good for about three days. Thursday, Day 4 is when the effect wears off and I feel very tired, little stamina and my stomach is mildly upset, this lasts for about a week, then slowly lifts.

So tonight I am up late as I cannot go to sleep. The drug makes me feel good, I am hungry and have enjoyed half a left over Turkey sandwich from our early Thanksgiving bird, and may even enjoy a second. My mind is alert and I simply do not feel tired. I lay on the bed and listened to a number of Leon Redbone tracks then read his biography on Wikipedia. I read the news, looked up Monday night football and checked the weather. I turned the light out, rolled over and was wide awake. I'm downstairs at the computer taking advantage of the energy.

That is what my chemo is like, and has been through all 5 rounds. However, the Dr. did lower the dosage by 15% on the two remaining drugs I take so hopefully the side effects won't be as severe this time, nor last as long.

Observations from my hospital stay

I have already written about the large bowel partial blockage I experienced in late October. I hope no one has to go through that. This short blog concerns the care I received while under the care of the hospital.

The hospital just opened in November 2013. It represents over $500,000,000 investment in our area and is a state of art hospital when it comes to technology. The hospital also recently received some accredation that puts in on the same footing as MD Anderson and Mayo's for level of care. It is a gem.

I went in through ER and did not experience the painful slow intake process usually associated with the ER. Within less than half and hour I had been triaged, had an x-ray that determined I had a partial lower bowel blockage and waited on transport to a regular room

Within a half an hour I was in a room and nurses were attending to me. Several times during the admission to the hospital the "hospitalist" came in and check. Now I was have violent cramps and pain all this time but no pain meds were prescribed until a Dr. had determined the final diagnosis and settled on a course of treatment. That is frustrating and kind of scary, but I can understand how necessary it is. I've been through that several times before.

The next 6 days were spent in pain, uncontrolable bowel movements, and boredom. The nurses were efficient, compassionate, and very efficient. I was truly impressed at their work ethic and care they exhibited for their patient. Everyone was part of the team and pitched in to perform whatever task was needed to be performed, from cleaning up the messes I made to administering medications. Nothing was too low or to unimportant.

I met a Dr. in the hospital who had been a general surgeon but didn't make the change with new surgery procedures and became a hospitalist. He was straightforward and honest and I appreciated it. He gave me advice and told me things that perhaps a Dr. wouldn't. I did appreciate the input.

All in all the experience, under the circumstances, was good. Just wish I didn't have to go back, but this one will be at the University of Arkansas School of Medicine in Little Rock so we shall see what comes of that.

Partial Lower Bowel Obstruction

I had my 4th Round of Chemo on October 20th. I enjoyed my usual two to three days of feeling good from one of the pre-meds they give me prior to chemo. However about Thursday I started having trouble going to the bath room and starting have fairly intense cramps. This worsened throughout the weekend until my belly was distended and I was encountering quite severe pain. I had no appetite and really did not eat much at all. I did try to eat and forced myself, but the minute food touch my stomach I would start these intense, hard cramps.

Finally Tuesday, Oct 28 I told my wife I couldn't take it any more and we needed to go to the ER. I was admitted that morning with a partial lower bowel obstruction. While I was relieved that an NG tube would not be of much help, I then learned the treatment is no food or water, nothing until it worked its way out. I went four days with nothing to eat or nothing to drink. One of the drugs in my chemo regime is Oxyplatin, which causes and intense reaction to cold. So even when I was able to suck on the ice chips I couldn't. I could not stand the reaction to cold.

I started to pass gas along about Thursday, heavy rumbling sounds that were almost as painful as relief. Finally Saturday, Nov. 1 I was put on a clear liquid diet. This meant juice, broth, water, etc. However my taste was all balled up and not much tasted good so I was getting much of my fluids through an IV.

In the meantime on Friday a x-ray revealed a pneumonia. That started an intense round of anti-biotics. Now my bowels have very little going on because of the blockage and then they come along with Round-Up and kill all the bacteria.

My stool looks like sludge, it is uncontrollable and comes frequently. Nurses are having to change my bed several times a shift, I am soiling myself several times and hour and wearing these hospital briefs to contain the output. Its a hell of a mess. I am not feeling any better and my wife is helping as much as she can, which is a lot.

By now, after four days we've established a good repartee with the staff and nurses. I don't know how they can work in the situation I offered them but they seem very professional and take it like just part of what goes on. In the meantime my modesty and embarrassment have fled like a fart in a windstorm.

I start feeling a little better on Saturday evening and Sunday but still I go and go. A Dr. comes in and says he believed if I kept pooping and passing gas and eating I could go home Monday. By Sunday it seemed like I was having a reversal, not in the blockage, but I just started to feel worse and worse.

Monday comes and the Dr.'s nurse comes in to check up and I tell her about feeling worse. She says it is a well known fact that if you stay in a hospital too long it will make you sick. Long story short, I was released on Monday and went home. I felt sick and weak and tired. However, I am getting better, In fact, I'd say I feel about as good as I have in a month. You see chemo colors all. I have know sense of blockage, but chemo just makes you tired, worn out and lethargic. That is where I'm at now having spent six days in the hospital and 8 days out. I'd call that about normal.

Next week a couple of tests, a PET Scan and an MRI with Contrast, then an evaluation of the situation by the Dr. in Little Rock and hopefully surgery in Mid-December. At least that is my hope, we shall see what the outcome will be.

Week 4 1/2 of 6 Chemo treatments

More than half way through the six chemo treatments. Supposedly, according to the Dr., people tolerate this type of chemo quite well. I am not one of those. Oh, at first it wasn't too bad, and I kind of fooled myself into thinking perhaps this won't be bad and I'll be able to work around the house and get a few things done.

I did wonder if as time went on the side effects would accumulate, and apparently some of them do. I had chemo on a Monday, six days ago. Chemo consists of two drugs administered via IV in the Infusion Lab. The third drug is administered via a pump I wear over 46 hours and is removed usually about Wednesday noon. The first few days I feel quite well, however that is due to a couple of anti-nausea drugs that contain a "feel good" component. That wears about about Thursday after being administered Monday.

It is all down hill from there. I did encounter a gagging sensation and in fact coughed up some phlegm a few times. I also had a soreness in my throat and a little acid reflux during the night time. I explained that to am NPA and she told me to take some Mucinex and Prilosec and that seems to have been pretty effective. However, I feel constantly ill at ease in my stomach and I am encountering abdominal cramps that are fairly painful. Early on when I would encounter these cramps I'd pass some stool which resulted in me having to change pads often and clean myself up. Last night I encountered cramps but passed no stool and no gas and got worried I was encountering a colon blockage. I don't think so as I've now passed some gas and a little stool, but I frequently encounter these cramps and they can make me catch my breath.

Food does not taste good and the smell of food cooking is almost nauseating. I am losing some weight because I just can't eat much. That effect has occurred in past weeks, and by the end of the second week after chemo my appetite has returned and I am able to put that weight back on. Last chemo round however, the cramps lasted up to the end of the two weeks and I ended up losing about 4 pounds. I'll see what happens this week.

Round 5 of chemo coming up they are going to drop the drug Avastin. It slows healing and has to be discontinued 6 weeks before surgery. I think that is the drug that causes me some constipation and cramping, I hope. We will be discontinuing the drug a week from Monday in preparation for early December surgery.

My dauber is down, but I'm not out of the race that's for sure. I'll keep you informed.

Third Chemo Treatment

I am fighting a second recurrence of my colo-rectal cancer. The first diagnosis was in 2007, the first recurrence in 2011 and the second this past August 2014. The recurrence is a small mass located right next to the incision site of the first and second surgeries. It apparently has been found early enough that it is going any place. However, I am undergoing chemo for a period of time will we determine the best course of treatment. I had my third chemo session Monday, Oct 6, 2014. I take three drugs, Oxaliplatin, Avastin and Folfox. The Folfox I take over a 48 hour period via a portable pump I carry and it comes off around Wednesday noon.

The first couple of days I don't feel too bad. In fact until the Folfox kicks in that I really start to go down hill. My stomach feels slightly upset, I am tired, just kind of worn out and don't feel good. Foods I normally enjoy begin to taste odd, in some cases down right bad.

Time takes care of it, I rest, eat realizing that as my appetite diminishes I'll lose some weight. Frankly that isn't all bad, but my energy level is very low and I don't have much ambition to do much.

I do have a sensitivity to cold that shows up in my fingers and mouth area. I have to drink tap water and be careful getting chilled foods out of the freezer or refrigerator. I seem to encounter more frequent esophageal spasms, in some cases if I am taking some pills I may even throw up, but it is just what is in my esophagus. My gag reflex seems very sensitive, I gag easily while brushing my teeth. I have not encountered mouth sores, but do have a rash around my knees and shins.

About a week after treatment I start to come out of the funk. In fact, by the weekend before I go in for more chemo I feel darn good. Right now this is my life and I'll get through this. The outlook isn't too bad, I should have surgery in Little Rock at the University of Arkansas Medical School this fall. I will end up with a colostomy, permanent, but given the aggravation I've gone through the last seven years it will probably be a relief.

And so it goes

Well a 2nd recurrence. The prognosis for success is dropping. I do not know to what level, and I don't care to ask. The colo-rectal tumor has reappeared right next to the part of the colon the previous two surgeries occurred. It is small, 2.5 X 3.5 cm, about the size of half of my small finger nail. It has not spread, but seems to be contained.

It is in an area that does not lend itself well to further traditional surgery. There is so much scar tissue from the radiation and previous surgeries that the doctors feel a heightened risk of creating a fatal bleed if they go in there again.

Right now I am taking further chemo to reduce the size of the tumor and buy us time to search for alternative. There are several. There is a new technology called nano-knife that uses small electrodes implanted in the tumor to collapse and destroy the cells which are then reabsorbed by the body. However, it is new technology and doesn't have much history.

I am to meet with a cancer surgeon in Little Rock sometime soon, I hope. He also expressed concern over the surgery, but is willing to talk with me. What I want to really explore is what is possible and what the efficacy is? It is a small tumor. I've had two unsuccessful surgeries and would like it clean up so I can get on with a cancer free life for some years.

I originally would like to have beaten my dad's life span of 94 years. I've shortened that. Ten more years would be great so I could experience the wonders and enjoyment of retirement and living with my lovely wife Terry. I'd also get to see my grandchildren grow. That is very important to me.

In the meantime am trying to take one day at a time. I do find my mind wondering if I'll be here next year, or the next year. I worry about that, but I am adjusting and just trying to enjoy the work I have to do today, the sun and the breeze and the afternoon pleasantries with my lovely wife. So goes this life.

What I have learned about Fecal Incontinence.

Well, I have written about my side effects of a shortened colon, I go to the bathroom quite often. I don't count anymore, but I will say that the average is probably ten times a day. Some days I have peace for several days, then some days I have all kinds of problems.

Let me try and give those who struggle with frequent BM's some of the things I have learned:

1. I wear pads all of the time. I used to think I could anticipate a BM, or that if I could just find the right kind of diet I would go less frequently and have more control. I cannot seem to find the right diet, mainly because it has not become a top priority for me. I react fine to bacon and eggs, but sometimes ham upsets the apple cart. I have not been able to pin a diet on reduced BM's.
2. I experience some days of peace, no BM's and I don't worry about it. I take Immodium to try and slow the digestive tract down, but quite frankly when I first take Immodium my system seems to respond by trying to eliminate as much waste as possible, then a few hours later it settles down.
3. Lying down seems to enhance the movement of stool through the system. I cannot tell you how many times I want to just lay down in bed, relax, play a solitaire game or three and go to sleep. Not to be, I'll get up between two and four times every fifteen minutes or so to go pass a small stool. Plus because I experience fecal incontinence I sometimes won't feel the passage and find I have soiled my pad which necessitates clean up and a new pad. It can be very frustrating.
4. Tips:
1. I am switching to pads that are called overnight pads, they have a longer tail piece and offer more protection. They are the same price as other pads, $12.58 at Sam's Club for a box of 76.
2. I am moving away from adults wipes to flushable wipes. All of a sudden there seems to be a lot to choose from and flushable wipes mean I'm not trying to disguise a large wad of dirty wipe and make it to the waste basket before everyone spots me in a public restroom.
3. I carry a "fanny pack" with a package of flushable wipes and about four pads when my wife and I go out shopping or out for an evening.
4. I no longer am self-conscious about putting a roll of used pads in the trash in a public restroom. You can use the new pad's plastic wrap to roll the soiled pad in and it usually has some type of adhesive strip to prevent the pad from unrolling. 
5. Traveling is an adventure. I recently went to Chicago and the trip up and the day or two we spent were fine. However I made the mistake of over indulging in chocolate and on the way home it was frequent stops, clean ups and replace pads. It is uncomfortable and humiliating, although I have learned to disguise my problem very well.
6. Frankly, unless you have good control over you BM's I do not recommend travel unless necessary. The unexpected always happens and sometimes its good, but sometimes it is just down right trouble. 

That's it for now friends. I hope you find some help in what I've written. Take care and do the best you can.

Colonoscopy: More information

I completed my routine colonoscopy yesterday, the results were good.

I learned more about the procedure yesterday and thought I'd share that in case someone else was as confused by the description as I was.

The prep directions call for you to take some form of liquid or pills to stimulate your bowls to void the colon of everything. You have to fast for a day so you aren't adding to the task. I think that process is completely understood.

What confused me was the term "clear." The term clear is used in describing the output from your colon as you use the laxative cleansers. To me clear means water clear, I mean that you can see through, like from a tap. Not so. clear to the medical community means tan, light brown but free from suspended solids, water like. Well now that I have a better understanding I should be able in the future to better control the outcome of my part of the process.

Yesterday my output was like water, but it was dark brown in color and I could see what I would call suspended solids in the fluid. However it was running close to the time of the procedure and I was afraid to take anymore because my system gets unhappy with the laxative and will extend the time immeasurably. As a result the GI Guy rated my prep as poor. He knows what I've gone through and he went ahead an back flushed a lot and took longer than normal to get a good look. He was able to see all the way to the cecum and everything was normal. He did take a biopsy of the anastomosis (surgery resection joint) just to be sure because that is where the tumor recurred two and half years ago. I was grateful for his time and his attention to detail.

In the future however, I shall begin earlier so the night before I can take the third dose. The normal procedure calls for two doses, but I don't tolerate the bulk of material I have to ingest and get violently sick to my stomach. By reducing the dose but extending the time I made it without any ill effects but did not really get a good prep. Next time I'll have a plan for better carrying off my part of the procedure.

Colonoscopy Prep

Today, February 24, 2014 is a prep day for a colonoscopy scheduled for tomorrow. I have been unsuccessful the last three times in getting a good prep. It is really frustrating. I tried back in August 2013. I got sick trying to consume the large amount of laxative and as a result did not get a thorough prep. When the GI Guy did the procedure he had to shorten it to a flex sig because there was too much fecal material above the surgical joint for him to continue. So, I rescheduled for October. This time I tried Miralax. I had to consume two bottles over the period of a day and drink copious amounts of water. I got so sick I couldn't stand it. I called and cancelled the appointment, I experienced explosive diarrhea and couldn't eat for three days I felt so bad. No more Miralax for me, regardless of what MD Anderson says.

Finally I rescheduled for tomorrow. This time I talked to the Dr.'s nurse and she gave me a sample of a prep I'd read about where the volume of fluid you have to take is reduced and you do it once the day before, then again about 4 hours before the procedure. I altered the process. I actually began on Sunday, two days before. The reason is I have experienced explosive diarrhea from time to time and it is uncontrollable. So I took a bottle of Magnesium Citrate on Sunday about 3 PM. I took one half, waited an hour and then consumed the remaining amount. I drank some water, but not as much as I should have. Bulk seems to make me sick. About 7 PM it started to work and it was about 3 AM before I was able to get much sleep. I did experience explosive diarrhea but I was prepared, I had purchased disposable adult diapers, I had adult wipes at each commode and my mind set was to weather the storm. I never got sick although I did experience some fairly severe abdominal cramps. I even got a warning system worked out, when my intestines would rumble big time, I'd best get up and get to the commode because something was going to happen. As a result I did go a lot, the explosive diarrhea stopped around three in the morning and I feel fine today.

My plan today is to follow the directions on the prep I have. It requires I drink 16oz of the prep followed by two 16 oz containers of water over the intervening hour. I'll do that this afternoon so if I end up with explosive results again I have time to let it run its course. I don't think I'll have the explosive action as I went a lot yesterday, so I'm hoping this will just be a final clean out. Depending on what goes on this afternoon I'll probably skip the early morning prep. Once clean, I should stay clean. Besides, I don't want to be experiencing cramping while the Dr. is trying to run the test.

I'm feeling pretty good about this. I'm comfortable, I had a plan, I handled the mess and my wife did not have to help me.